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A MyFibroTeam Member asked a question 💭
La Crosse, WI

Anyone have any experience with trigeminal neuralgia?

August 25, 2016
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Answer Summary

Members shared deeply personal experiences with trigeminal neuralgia, describing facial pain so intense it brought some to tears, and offered... Read more

Members shared deeply personal experiences with trigeminal neuralgia, describing facial pain so intense it brought some to tears, and offered both empathy and practical strategies to manage flare-ups. Several members found relief through medications like Tegretol, Topamax, and Gabapentin, while others recommended physical tools such as mouth guards to prevent teeth clenching, TENS units to release jaw muscle spasms, soft foods during painful episodes, and gentle facial massage techniques or heat application near the ears. A recurring theme was the importance of experimenting with different approaches since not everyone responds to the same treatment, with some members finding success through surgery when medications failed or caused intolerable side effects.

A MyFibroTeam Member

I use a tens unit when my jaw muscles start to clench. I apply it to each side of my jaw for 20 to 30 minutes. It releases the muscle spasm. Some insurances will pay for the tens unit. I also use a mouth guard at night to protect my teeth from damage.

August 26, 2016
A MyFibroTeam Member

I was diagnosed with trigeminal neuralgia. Mine affects the right sided of my face. I would also get the tingling in the lips and in the right side of my face. My doctor prescribed Topamax. I take 100mg twice a day and that has kept it pretty much under control. I occasionally have flare ups and during those times I will take Tramadol for the pain.

August 26, 2016
A MyFibroTeam Member

My doctor prescribed tegretol, a drug used predominantly for seizures. But it does work on pain in the 3rd facial nerve which includes the ear and jaw. It doesn't eliminate the pain completely, but makes it less annoying. I also wear a dental night guard to protect my teeth from the sleep clenching

August 26, 2016
A MyFibroTeam Member

Since you clench your teeth I know that it is not a fully estetic solution mouth guard for sport as some are more or less spongy. It helped my daughter during chemotherapy as she had that type of pain (she was even grinding her teeth and broke one baby teeth) the mouth guard was not the most confortable but it did absorbed a part of the pressure. For liquid food the milk 2 go and ensure or carnations breakfast are the ones with the best taste. She was 8yo when we had to deal with that. They suggested massage of the jaw (bad idea in her case) she liked to put hand warmer close to her ears but not over it. (She never explained it but I saw the relief)

August 26, 2016
A MyFibroTeam Member

I have been suffering episodes of face pain and I have to say it's one of the worst symptoms because it's so hard to carry on. You just want to sob but that makes it worse! Someone on here said they gently drag their finger tips from the jaw down to their chin to try to relieve it. I know this sounds weird but when I'm in pain I clench my teeth and make it worse so I puff out my cheeks and then try to have a more relaxed jaw. My physio said to try to eat soft food for a while too. When it's super bad it just shoots across my face too and if there's a solution I'd like to know!

Feeling for you, hopefully your pain will pass as a temporary flare! X

August 26, 2016

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